Category Archives: medical

Summer Shaming


Summer’s here! Well, maybe not by the calendar yet, but certainly by the change in the weather and absolutely when it comes to summer’s main event: body shaming. Of course, little of this is pointed at men, unless you count Bruce Jenner after his transformation to Caitlyn.

I don’t know about you, but suddenly I can’t go near a magazine stand or log into online periodicals or blogs without being assaulted by a series of photo montages that focus on a single part of a woman’s body. The first one I saw was, of course, breasts, then came butts, followed by legs. I didn’t see any montages that were pictures of an entire female person. I didn’t see any photo montages that featured men.

Oddly nowhere among these montages were any other identifiable information about these women like education, accomplishments, contributions to community or society, area of expertise, or even a name. Clearly the only thing of importance was how pleasing their singular body part was to a man in one man’s opinion. Actually, I’m not even sure I can target only men here because women seem to be becoming ever more vicious in judging one another’s physical appearance.

I even caught some dumb tv show where the cast attended a fashion show put on by a plastic surgeon and the “models” were women who had all had a procedure done. In fact, they were organized by procedure with introductions like, “here comes the parade of butts!” and a dozen or so women all dressed in white jeans with white T-shirts tucked in, marched down the runway proudly displaying their newly enhanced butts. Family, friends and potential patients vigorously applauded. Then there was the parade of women who proudly announced all the procedures they had done… in great detail.

As if the outward body changes weren’t enough, now there’s a growing narrative that women need to have a labiaplasty to create the perfect labia. Huh? So we still maintain our horror at female genital mutilation, but willingly schedule cosmetic surgery that could carry serious negative results on our genitalia.

I’m never going to dispute that sometimes corrective surgery for any number of issues is a godsend, but when it gets to the point where we don’t know what our bodies are supposed to look like and therefore think we need to subscribe to an artificial standard, then it’s clearly time to hit a reset button.

Listen, I’m not one of those all natural, crunchy women who ignores all manner of conventional enhancement. I dye my gray hair, I shave, I get pedicures and I’ve had laser hair removal. And whatever manner of body celebration or objectification that takes place between my husband and me is just fine because it involves all of me along with the body part. And vice versa.

But I wonder where the line is between tweeking yourself for your own sake and getting a major overhaul to try to fit some false illusion of women’s beauty.

Certainly body image is something you carry inside yourself, but the constant bombardment of rubber stamped images of “beauty” can’t possibly be helping everyone’s self-image. By the same token, our hyper attention to these kinds of superficial topics and vacuous people (Kardashian kabal) rather than humans of worthwhile knowledge, action and accomplishment speaks volumes. Can we all just get a brain?

If you really want to explore images of some individual body parts, check out this Instagram account: mrs_angemi. It might not be for the faint of heart since she posts pictures of actual body parts, but if you want a little truth to your version of body “normal” maybe you need to see what bodies actually look like and her commentaries are spot on. One of her latest posts is a picture of a liver damaged from wearing corsets.

So happy summer to all and celebrate the individual that you are.

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Filed under advice, image, medical

Healthcare is Making Me Sick


if you had a 7pm dinner reservation and the restaurant kept you waiting until 8:30 to be seated, you’d have plenty to say, right? maybe you wouldn’t even stick around until 8:30 because there are always plenty of other restaurants who will seat you right away and serve you good food. you’d probably post something on social media to warn others and you’d most certainly tell people about your lousy experience.

so why do we put up with the nonsense from our doctors and the healthcare system?

my blood pressure is still elevated after trying to play catch up with doctor’s appointments over the past couple of weeks. i’m not ill, i just wanted to change my primary care doctor and i needed some prescriptions refilled and got a recommendation to see an ear, nose and throat specialist regarding the tinnitus in my right ear.

changing primary care doctors was far more work and aggravation than necessary. it occurs to me that i should be in primary control of my personal health records with my doctor as a co-guardian so that they go where i go and i don’t have to beg and cajole and pay to get them moved.

after i finally got everything moved and had my appointment and my bloodwork done, i asked for the one thing i needed all along – prescription refills. guess what was the one thing the doctor didn’t do even after i reminded her.

next was the ear, nose and throat specialist. the ent specialist’s office was very nice when i called to make the appointment and told me to download the new patient forms and fill them out before the appointment. being the dutiful patient that i am, i do just that. after searching for the building that houses the ent doctor, since there is no address number on the building, i arrive at the office with papers in hand.

i hand over my new patient paperwork only to be greeted with a disgusted harrumph by the front office person who hands me a clipboard with new patient paperwork and a snarl that the paperwork i have is not correct. when i sit down to fill out the new patient paperwork, i discover that what i had downloaded was actually the updated version of the paperwork i was handed. rather than argue with the rude staff, i filled out the second set of paperwork, which would have gone a lot faster if i had had the old paperwork to copy from.

paperwork done, i waited to be taken back for my 3pm appointment. by 4:05 i was still sitting the waiting room. i wasted an entire hour listening to the office staff complain about everything under the sun, as well as work as inefficiently as possible due to their obvious lack of computer knowledge. by 4:15, i was thinking about leaving because the time on my parking meter was about to run out and i was just thoroughly disgusted by the wait time, not to mention the staff’s attitude. problem was, they took my insurance card and clipped it to my file so i’d have to confront the staff to get it back.

just as i was contemplating my escape, i heard the rude office staffer say to another staffer, “take this lady back before anyone else”, at which point i look up to see a dramatic roll of the eyes. i wait to see whether i’m the one taken back next, which would make me the “lady”. sure enough. i’m put in an exam room where i wait another 20 minutes before the doctor shows up.

the doctor was pleasant and knowledgeable but rushed. i waited 90 minutes for her but she can’t spend more than 10 with me.

i have a quick exam and some audiology tests then meet with the doctor again who tells me about as much as i already knew from reading about tinnitus on the internet. she tells me to get an mri to rule out something that she doesn’t even think is the case and basically tells me to get a white noise machine to “retrain” my brain. there is no cure for tinnitus, what you have to do is feed yourself constant low level noise to try to condition your brain to get used to it so you will notice the tinnitus less. um, okay.

just attempting to talk about scheduling the mri with the office staff was an exercise in aggravation and i exited the office without scheduling anything. from the research that i’ve done, the audiology test and examination were enough information to rule out something major that an mri might find. i’m not willing to waste more of my time and spend more on copays so that a doctor can play cya. what i wanted was to get my money’s worth from the ent doctor in the first place.

after witnessing L’s intense healthcare experience during her bone marrow transplant, i understand now that if you have a disease that requires intensive interplay between doctors and treatments, you will likely get the most efficient version of healthcare in america – that’s not to say it’s easy, just that the providers have a better chance of being clustered together for better access and information sharing.

but if you are trying to move through the patchwork mess of a healthcare system for care that is important but not critical or life threatening, you’d better be prepared to put in a lot of work on your own and know when you should allow a provider to spend your money and when it’s time to pin them down and get service from them and not get passed off.

the part of the equation that the healthcare system doesn’t get is that their patients are paying customers. do you frequent businesses whose hours are inconvenient for you? you do with doctors. you probably wouldn’t burn through pto to go to the cleaners, but you have no choice with doctors because doctors only work 9 – 4 and not on saturdays. the cleaners are open on saturday.

if you were charged for an expensive test on your car “just because” you’d have plenty to say about that. if someone messed up your take-out order, you’d give them an earful, yet we are forced to put up with the lousy service, high cost and perfunctory care offered by our healthcare system.

this is not the fault of “obamacare”, this is a problem with a system that makes it so difficult to take your business elsewhere that you’re stuck with the same bad service. maybe our insurance companies should give us the option to consider our copay as a tip for service. better yet, you know how doctors and staff spend a great deal of their time applying codes so they can get paid for your visit? how about insurance companies create a payment code list for service, satisfaction and health concern treatment/resolution that the patient fills out?

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Why Jenny McCarthy (and other Idiot Celebrities) Should be Charged with Murder (or at Least Child Endangerment)


you’re familiar with the expression, “everyone’s an expert”. turns out that a whole lot of people who have a platform because they are entertainers or naked in public think they are experts too. worse, people read b list celebrity nonsense and then declare themselves experts. here’s a nice tidbit on delusional thinking that kind of defines more and more people today

it’s one thing to think of yourself as an expert on climate change, the consequence of which is just a whole lot of dinner table arguments. it’s quite another to think of yourself as an expert on immunology and disease, the consequence of which can kill or seriously injure your unimmunized kids (not to mention those around you who are immunocompromised).

these two recent events are why celebrities like jenny mccarthy and their anti-vaccine diatribes are just plain dangerous.

there are still a lot of us alive today who remember the bad old days without a lot of vaccines. we knew kids who were paralyzed from polio, we knew families who had an iron lung in the house, there were kids in our classes who had leg braces to help them walk after a bout of polio.

i remember when the polio vaccine was widely distributed. we lived next door to a hospital and there was a huge iron gate that opened up to the physician parking lot next to the front of the hospital. on the day the polio vaccine was distributed those gates were opened and there were crowds of people lined up from the front door of the hospital through that parking lot and down the street next to our house. entire families waited for hours, excited and grateful to be receive a little paper cup with a sugar cube infused with the polio vaccine. (i actually met dr. jonas salk of polio vaccine fame and it was quite a moment.)

tetanus, diphtheria and pertussis (whooping cough) were the only vaccines administered when i was a kid, so i had the measles, mumps and chicken pox, thankfully i did not have polio. there is some family lore that one of my sisters had polio as a child, but i never really got confirmation of that. back in the day when someone in your household had one of these diseases, the city would come out to the house and tack a bright orange “quarantine” sign on the front door, or in our case the front picture window, to warn the neighbors. i still remember looking out the window past the sign and out at the neighborhood kids laughing and playing in the street and being stuck in the house for what seemed like eternity. what i very much remember was how utterly miserable it was to be sick with the measles — high fever, itchy skin, gunky eyes and just feeling very, very tired. i also vividly remember how awful it was to have the mumps, glands swollen worse than when i had mono in college. thankfully, i made it through all of those diseases without long term consequence, but i can tell you that i know kids who did not — kids who found out as adults that they had fertility problems, eye problems, heart problems or other issues related to childhood diseases for which kids now can be vaccinated.

i never had the german measles (rubella) which i only discovered when my obgyn tested me when i was pregnant with my first child. she was practically panicked to find out that i was not immune to rubella since it’s harmful to a growing fetus. she told me to stay away from children, people who have children and anyone i thought might not have been vaccinated for rubella. yeah, well that was kind of impossible. minutes after giving birth, a nurse marched into my room and gave me a rubella vaccine. the next day i went home from the hospital with a distinctive rubella rash on my hands and feet but healthy baby girl.

like so much else in life, generations grow older and the stories of “what life was like before …” fall on deaf ears. every generation wants to re-invent the wheel. what’s the expression? you’re entitled to your own opinion but not your own set of facts. as intelligent as people think they are, many fall back on such a failure of historic knowledge and context coupled with a primal “well, i’ve never seen it” nonsense. oddly though, many of them believe in some kind of deity and i guarantee you haven’t seen a god…

the reason very many of the diseases for which children are inoculated today are not seen in this nation is because of vaccines. the vaccines prevented the disease from proliferating. what part of this is so hard to understand?

i can figure what someone like jenny mccarthy gets out of linking vaccines to autism and that is that her fabulousness cannot be questioned if she blames what looks more and more like a genetic mutation on the evils of vaccines that were perpetrated upon what must be perfect offspring because it came from her. interestingly, mccarthy’s silicone breast implants do not cause her any alarm…

here’s the irony: “uneducated” parents in impoverished nations who have little access to consistent medical care clamber to get vaccines for their children while middle class, “educated” parents in a wealthy nation sit around and pontificate and send their children into the world at risk.

how smart are you if you take your marching orders from the likes of jenny mccarthy?

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The Jonas Salk(s) of our Day?

if you have not looked at the latest issue of philadelphia magazine, you have to grab one asap either on newsstands or on-line. and not why you think. i know, i know, the cover story is the best of philly, the most popular issue of the year and as if that weren’t enough, the cover picture is of a pile of doughnuts (very good doughnuts from what i hear). but that’s the not the reason to see the issue.

read the article titled, “has carl june found the key to fighting cancer?” you will hardly find better summer (or anytime) reading. kudos to writer jason fagone for the masterful way in which he tells this story and bigger kudos to carl june, david porter, bruce levine, and michael kalos who are the stars of the story.

dr. porter, one of the physicians whose work is profiled in the piece, is L’s oncologist at penn’s abramson cancer center and he, together with carl june, an expert in immunotherapy, bruce levine in vaccine production and michael kalos professor of pathology may just have found a cure for cancer.

pause and consider that.

they would never say they’ve found a cure, in fact, i’m considered unscientific for saying that. but the work is so exciting and the results of their trials even more exciting that i’m going to say it anyway.

in short, what they have done is figured out how to extract a person’s t-cells (a type of white blood cell that play a central role in cell-mediated immunity), essentially hop them up, multiply them, infuse them back into the patient and wait for the patient’s own cells to attack the cancer. which they do in a big way. so big, that the team almost lost a couple of patients when their body’s immune system went into overdrive.

it’s a simple yet elegant solution to fighting cancer and, oh by the way, brilliant. this team is not the only team of researchers working along these lines. every major cancer center has clinical trials in this type of gene-therapy as a cancer treatment.

sloan-kettering

ucsd (my alma mater)

md anderson

make no mistake, these trials are revolutionary. i would call them miraculous but that discounts the brilliant thinking and hard work of these professionals. chances are these therapies will be fast-tracked by the fda and become standard therapies in the next decade or so.

i try not to think too much about how L may have been able to skip the tough road of a bone marrow transplant if she had been diagnosed when this gene therapy was standard treatment.

instead, i’m imagining the number of lives that will be saved, the children who will live to be adults. i’m imagining the patients who will no longer have to endure the rigorous road of chemotherapy or bone marrow transplant. i’m imagining what it will be like for legions of patients to hear a diagnosis of cancer and not think that it’s a death sentence.

i’ve said it before and i continue to repeat it: it’s a bright new world.

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Not enough thanks

It’s a shame that a frenzy of shopping makes more headlines than a holiday with a concept as simple as giving thanks.  The whole crazed shopping thing is not my deal, and I couldn’t care less what people do on their Friday after Thanksgiving, but I very much do not like the idea of Thanksgiving being co-oped by shopping nonsense.

Thanksgiving may have passed, I’m still thinking about giving thanks.

First of all, I am thankful for family and friends.  I am thankful for how fortunate we are that we employed, relatively financially secure and of a means to enjoy a celebratory feast and generously share our resources with those who have challenges.  Most of all, we have our health.

It’s been almost four years since L’s diagnosis and two years since her bone marrow transplant.  Her health is stellar.  She had a rough road and more daily issues that any of us care to think about, but now she is healthy and almost completely free of the lingering effects of transplant. I’m sure for all the medical practitioners, researchers and technicians this is somewhat commonplace, but to me it’s a miracle of the best kind because it hinges on research, knowledge and practice.

Thanks to those who spend their lives working on treatments and cures for our medical conditions, our world and our future have changed for the better.  And, this is just the beginning.

Researchers at Jefferson announced that they may have discovered that a hormonal imbalance is the cause of colon cancer.  So far the research has been confined to rats, but their testing shows that virtually 100% of human patients diagnosed with colon cancer shared the same hormone deficiency.  They are testing whether supplementing the hormone alerts the body’s immune system to attack the cancer cells and prevent future tumor growth.

Then there’s this news from the Abramson Cancer center at the Hospital of the University of Pennsylvania:

“The Abramson Cancer Center (ACC) made a major breakthrough in cancer immunotherapy, which was recently published in The New England Journal of Medicine. “What we’re doing falls under the area of personalized medicine in the extreme sense – using a person’s own white blood cells or tumor cells to develop a personalized vaccine,” says Carl H. June, M.D., Director, Translational Research at the ACC, who is overseeing the development of these vaccines.

Dr. June, widely regarded as one of the world’s leading cancer immunologists, has spent years conducting research at the ACC with modified T cells, cells in the body that are capable of recognizing, attacking, and destroying foreign invaders, and assembling a team of physician-scientists to advance immunotherapy for many types of cancer.

During immunotherapy, the patient’s cells are removed and modified. The altered cells are infused back into the patient’s body following chemotherapy. “This isn’t a drug in a bottle or a vaccine in a vial,” Dr. June says. “This is more like a next-generation blood transfusion.” – Abramson Report, Winter 2012

Doctors at MD Anderson believe that “dying from cancer can eventually be as rare as dying from pneumonia.” Researchers are closest to finding cures for five cancers:  lung cancer,

melanoma, triple negative breast cancer and ovarian cancer, prostate cancer, acute myeloid leukemia/myelodysplastic syndrome and chronic lymphocytic leukemia (blood cancers).

Those are just a few examples of what’s going on in the world of cancer research, I’m quite sure there are dedicated medical professionals around the world working every day.

Thanks to them we can all look forward to a brighter future and that’s light years better than any dumb sale.

 

 

 

 

 

 

 

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twenty four and counting

it’s been two years since L’s bone marrow transplant.  sometimes it’s hard to believe it ever happened, sometimes it’s hard to forget.  this last year went a lot faster than the previous one.

i’m sure it felt a lot faster to me than it has to L, considering that i didn’t have to go through the nightmare of the disease and the treatment.  still, it changed me.  it changed our family.  it changed a lot of previously held notions and future endeavors.

a year ago i couldn’t imagine re-reading entries from the journal i kept, but strangely, this year i’m drawn back to it.  probably because i know that l is fine, more than fine, she’s thriving and the cancer is gone.  it only took a couple of sentences before i once again felt the heat, the smell of mildew, sweat and bug spray that constantly hovered in the humid south texas air, remember how hard it was to put on a strong face every day and walk into that hospital.

the actual anniversary date of L’s transplant is august 27th.  it will be hard not to relive some moments from that day, and i know there’s no way my thoughts won’t go there on monday.

but this year there’s a twist.  we know the name and other contact information of her life-saving donor.  it was a very emotional moment when L told me his name, there aren’t enough of the right words to say to and about him.

maybe the most important way to thank the donor is to find out why he did it.  what made him sign up for the registry (and more importantly), say yes when asked?  (only about half of people who sign up for the registry agree to actually donate when they are contacted)  the potential donor who would have been the best possible match for L was unavailable (or maybe said no).  there were two more potential donors who were less of a match.  the donor who said yes was one of the two.

i wonder whether he was told how high the stakes were for her, that he was part of a tiny pool of people with the power to save her life.  i wonder whether he didn’t need to be told, if when contacted he said ‘yes, i made a commitment and i don’t need to be convinced’.  doesn’t matter.  he said yes to the needle harvesting method, the one that people hesitate to follow through with.  i wonder whether more of them would say yes if they knew all the pain and discomfort cancer patients endure, and that their discomfort would be minimal by comparison.

i really hope to be able to be called to donate one day. i would not hesitate, but then i know what the stakes are, i’ve seen first hand the miracles and the tragedies.  i didn’t even have my name in the registry until L got sick.  i try not think that there may have been someone i could have been a match for all those years before i was in the registry.

i posted my journey entry from the one hundred days on the blog here (look under the 100 days tab) if you’re interested in reading the details of that day.  knowing the name of the donor and where he was that day makes the entry that much more moving.

on transplant day L asked where the donor was from and the team replied that he was a resident of earth.  doc talked about how the cells were being flown in, though we were never sure whether that was a cover-up or the truth.  now we know the cells were flown halfway across the country like one of those doctor shows on tv.  precious cargo.  i get choked up.

i certainly hope we will have met the donor before the next anniversary.  i’m trying to imagine something articulate to say.  i told L to tell him that we’ll all show him a great time in philadelphia.  it’s the least we can do until we find a proper way to show immeasurable gratitude for the man that saved our daughter’s life.

 

 

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Boobies, boobies everwhere and a not a one who thinks

Every generation thinks that they are the first generation to ever have kids and that they (in their infinite wisdom) are going to re-invent the world of childbirth and child raising.  Yeah, yeah, yeah.  Me too.   

Guess what?  Anything more than common sense in nonsense.  (I realize that pre-supposes that people have common sense…)  

First there was Ricki Lake who felt the need to push her kids out in a kiddie pool in the middle of the living room in front of about 150,000,000 witnesses, including her other kids.  And plague us with a documentary on the subject.  Talk about trauma.  Seriously, does that image of your mother enhance your life?  Some things are just private.   

The whole natural childbirth argument as a competitive thing annoys me.  Because, quite frankly, it’s none of your business and it doesn’t really matter.  Have your kid whatever way seems right for you and yours and quit thinking that it’s any more of an accomplishment to have them one way or the other.  Staying healthy and functioning through a pregnancy and bringing another generation into this world is the accomplishment.  No one cares how they got there.  And yes, I had natural childbirth for one of ours (it was accidental, but still, I did it) I also had two babies others with pain medication.  I vote for medication.  You might be into pain. No one cares.  

Now there’s this nutball on the cover of Time Magazine who insists on breastfeeding her kid even after the kid’s waaaaaaaaaay too old to be breastfeeding.  There is no debate about this, as far as I’m concerned.  (I worry that this kid is going to be bullied)  Sure looks like this is waaaaaaaaay more about the mom than the kid.   

I breast fed all three of our children, because I could and it came quite easily to me.  So what.  The only one I set a schedule for discontinuing the nursing was our oldest and that was because I had to go back to work and was not interested in even trying to do the whole pump, freeze, drag stuff to work and sit alone in the ladies’ room stuff.  Kudos to anyone who did, but it wasn’t for me.  I was still nursing the second one when I got pregnant with our third, so I pretty much nursed for more than three years straight.  No one put me on the cover of Time.  (okay, so yeah, I don’t look the chick they did put on the cover…) 

What I remember about the second two and nursing was that they indicated quite clearly to me when it was time for that to be over.  They wanted their independence and I wanted them to have it.   

Seems to me that what’s always left out of theories about raising kids is that every child is different.  Every child progresses at their own pace, has their own needs, wants to interact and control their world in their own way.  Here’s some parental advice: pay attention to who your kids already are when they’re in your care and give them enough room to develop and enough barriers to guide them.   

The rest of it you’re doing for yourself and not for them.  And, in the end your job is to launch them, not be the self-appointed queen or king of their lives.   

Just because you’ve had a kid and can read crap on the internet doesn’t make you an expert on raising kids.  That’s my job. 

 

 

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